The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers.
Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other disease-related issues and those brought by the pandemic.
Developed and led by the RDCRN Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, the research survey is one of the first nationwide efforts to measure how this public health crisis is challenging the 30 million people in the U.S. estimated to have one of about 7,000 known rare diseases.
Oxford Biodynamics PLC (LON:OBD) was spun out from Oxford University in June 2007 with the aim of translating fundamental scientific advances into a commercialised platform technology and a new generation of biomarkers for cancer, ALS and other diseases.